UNIVERSITY OF MICHIGAN

CONSENT TO BE PART OF A RESEARCH STUDY

 

Study title: Perceptions and experiences of stigma among Indian parents of children with autism spectrum disorder

Principal Investigator: Sahita Manda, University of Michigan, School of Public Health

Co-Investigator: Elizabeth Buvinger, PhD, University of Michigan, Department of Psychology

Faculty Advisor: R. Alexander Blackwood MD, PhD, University of Michigan, Office for Health Equity and Inclusion

You are invited to take part in a research study.  This form contains information that will help you decide whether to join the study. Taking part in this research project is voluntary. You may choose to only answer some questions. You do not have to participate, and you can stop at any time by closing your web browser. If you leave the study before it is finished, there will be no penalty to you. 
 

PURPOSE OF THIS STUDY
The purpose of this study is to understand perceptions and experiences of stigma among Indian parents of children with autism spectrum disorder (ASD) along with their cultural beliefs. We are interested in comparing the results for Indian-American parents residing in the United States with Indian parents residing in India.

 

WHO CAN PARTICIPATE IN THE STUDY
To be eligible to participate, you must be a parent of Indian origin with a child 17 or younger diagnosed with ASD. You must also be residing in either India or the United States.

 

INFORMATION ABOUT STUDY PARTICIPATION
Clicking the “next” button at the bottom of this page will serve as consent to participate. If you choose to proceed, you will be directed to an electronic survey. This will take 15-20 minutes to complete. The survey will ask you about your perspectives of and experiences with ASD as well as your cultural beliefs. Information from your survey will then be analyzed to evaluate the impact that stigma has had on families of children with ASD. This survey is completely anonymous, and we encourage you to respond to the questions as honestly as possible. 

 

INFORMATION ABOUT STUDY RISKS AND BENEFITS
There are no direct benefits or compensation for this study. However, the indirect benefit of your participation includes informing culturally sensitive and evidence-based interventions that allow for better integration of autistic children within society and improve the well-being of these children’s parents. Because it collects information about your experiences with your child’s ASD, this study carries a minimal risk of unintentionally triggering stress and anxiety. To mitigate such effects, you will be directed to a variety of family support resources after you finish the survey.

 

RESEARCH INFORMATION
The results of this study could be published in an article or presentation, but would not include any information that would let others know who you are without your permission. We may use or share your research information for future research studies. If we share your information with other researchers it will be de-identified, which means that it will not contain your name or other information that can directly identify you. This research may be similar to this study or completely different. We will not ask for your additional informed consent for these studies. 
 

CONTACT INFORMATION
Who can I contact about this study?
Please contact the researchers listed below to:

●  Obtain more information about the study

●  Ask a question about the study procedures

●  Leave the study before it is finished

●  Express a concern about the study

 

Principal Investigator: Sahita Manda
Email: sahita@umich.edu

Co-Investigator: Elizabeth Buvinger, PhD

Email: buvinger@umich.edu